Dr. Hubbard, Alarming Comment from Seattle

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby willm » Tue Feb 08, 2011 6:00 am

Rokkit wrote:
I just wish someone would publish a good-sized, venography study comparing pwMS to healthy controls.


I could not agree more. I have seen plenty of XRay venograms of pwMS clearly showing severe blockages of IJVs etc., including my own. But if I was asked "don't these occur in people without MS?", I would not know the answer.

If this study were carried out using the "Gold Standard" XRay Venography and showed conclusively that the blockages are far more prevelant in pwMS then, surely, the MS societies and neurologists would have to accept that a new dimension to MS has been discovered and that it should be more enthusiastically researched.

It would be black-and-white proof of a physical problem with pwMS which would be much harder to dismiss than the flow issue which, with its complexity, training requirements etc, seems to be a difficult message to get across
User avatar
willm
Family Member
 
Posts: 26
Joined: Fri Nov 27, 2009 4:00 pm

Advertisement

Re: Dr. Hubbard, Alarming Comment from Seattle

Postby Cece » Tue Feb 08, 2011 8:59 am

drbart wrote:Hubbard brings this up in his talks on YT. But, he hadn't mentioned his own non-normal test, that I know of.

It's interesting, isn't it. I also had not heard of him having an abnormal test before this. (But as it was an ordinary MRV, those haven't been correlating well with what's seen on catheter venography or been particularly good at distinguishing between healthy controls and people with MS.)

More research needed....willm, I agree with you, except how do you talk the healthy controls into being in a control group for an invasive procedure? Or get that past an IRB? You'd want non-related controls, maybe spouses? Or is there any group of patients who are getting a catheter venogram done anyway that would be healthy enough to serve as the control group?

Or can the catheter venogram studies be done as cadaver research?
drbart wrote:By some accounts, fatigue is the #1 indicator of whether relief of symptoms will follow relief of CCSVI.

Speaking of which, we'll all be hanging on any news about your outcome.

No pressure or anything..

Dr. Dake's RR patients showed a reduction in fatigue by 50% that was getting even better after a year...wouldn't that be something! :)
Cece
Family Elder
 
Posts: 8989
Joined: Mon Jan 04, 2010 4:00 pm

Postby selkie » Sat Feb 12, 2011 12:47 am

Sorry, I couldn't get through all 4 pages on this discussion.

But as someone said, Arlene Hubbard is on FB and answers ALL questions (at least all the ones I've asked her).

Has anyone just asked Arlene what her husband was implying?

I'd rather hear it from the horse's mouth than watch others debate 3rd hand information til the cows come home.
User avatar
selkie
Family Elder
 
Posts: 222
Joined: Sat Nov 21, 2009 4:00 pm

Postby Rokkit » Sat Feb 12, 2011 7:12 am

selkie wrote:Sorry, I couldn't get through all 4 pages on this discussion.

But as someone said, Arlene Hubbard is on FB and answers ALL questions (at least all the ones I've asked her).

Has anyone just asked Arlene what her husband was implying?

I'd rather hear it from the horse's mouth than watch others debate 3rd hand information til the cows come home.

Arlene's explanation of her husband's remarks was posted on one of the pages you couldn't get through.
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Postby Lyon » Sat Feb 12, 2011 7:46 am

..
Last edited by Lyon on Fri Jun 24, 2011 8:19 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Rokkit » Sat Feb 12, 2011 8:19 am

Lyon wrote:...that Hubbard's statement wasn't proof positive damning to the theory of CCSVI and didn't make or break ANYTHING but SHOULD be considered good reason to consider that maybe we don't know and shouldn't be so convinced that "normal" means without obstruction/reflux.

I agree. More research needed. And it can't come soon enough.
Rokkit
Family Elder
 
Posts: 669
Joined: Tue May 19, 2009 3:00 pm

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users